Sunday, September 12, 2010

Sorry I took so long........

Well.....I see it's been a while since I posted. So much has happened since I strolled on the beach with Phoebe.

I have had a week of feeling glum, mixed with confusion, a tiny bit of relief and happiness thrown in also. Follwed quickly by concern for my family and friends in Canterbury/Christcurch as they deal with the September 4th Earthquake and the numerous aftershocks (must be over 400 in total by now!!). To all Cantabrians, I have been thinking about you during this time and I look forward to seeing you again soon.

We met the dashing Neuro-surgen Andrew Law at Auckland Hospital. He was freindly and approachable. Also disturbingly excited by my brain only a man of science could be I guess ;-)
As I recall the meeting, it feels like the trailer to my own personal movie. All 25 minutes of it.

But I saw it. My brain. A comfort to see that I have one, and a very healthy one too.

It is an excellent idea to have a support person at these kind of meetings because there were moments when the MRI imaging in front of me was all my brain could cope with and the specialist's voice faded in and out beside me. I had a long list of questions written down in handbag, but not enough time to ask them all. I actually wish I had a copy of the images, I'd love to show you. If you can put aside the scary feelings, it is amazing to see inside your head!

I coped extremely well. I listened to the description of the tumour "it appears benign, larger than expected for it's position, normally seen in children, no obvious major blood supply, not imbedded in brain matter, but growth is making the ventricle duct for draining cerebrospinal fluid narrower than normal. My gut instinct would be to wait six months and monitor it. Get some history on this thing"

( I wasn't expecting that)

Next thing I knew I was out, sitting in the hospital cafe, blubbering over a very healthy sandwich which was very quickly becoming a soggy one :-(
Why the tears?..............I really don't know. All of the above is very positive. I wasn't told I had brain cancer or that it was inoperable. Maybe it was the overwhelming reality of finally seeing "it" and maybe some relief.

I spent the next few days updating people, all of them excited that things were leaning towards the positive side. Still, I couldn't shake the feeling of glumness.

I guess this is also why it took me a while to write on here. My reaction has been very different to anyone else around me, including the specialist and it has made me quite confused.

But once again, time is a wonderful thing. I've done a bit of soul searching and decided that I want my days to be happy, not full of dread.

So for those of you who are 'sciencey', brain enthusiasts or are just simply concerned or interested here is a quick summary of my current progress:

* Tumour appears benign. Not being biopsied as yet as the procedure is pretty full on surgery and has it's own risks. Biopsy will probably occur in the future though.
*Could be removed if needed. Central location means there are risks of on going consequences from the surgery (eg field of vision, memory, bleeding, death). But in reality all surgery has some of these risks.
* Located near left temple lobe, in front of Occipital lobe, but inside the ventricle that contains the cerebrospinal fluid, making the draining tube narrower. Pretty much in the middle, near back of head.
*The surgeon doesn't really know what it is and he and his colleagues have had many coffees and playground discussions over my MRI images. They probably all want to get their hands inside my head for a play.....should I be flattered? ;-)

Come off all steroids.
Wait for six months: Neurosurgeons are not keen to remove it if it is causing no harm. I am well and the surgeries are risky and not desirable if the person is essentially well.
MRI to see if growth has occurred ( or I may have miraculously reabsorbed the beast LOL)
Based on what they see and the new history gained; biopsy, drugs or removal will then be discussed.
I may simply be monitored and reviewed every six months.

I want to include here a little plug for myself. The surgeon did comment that this tumour has probably been growing very slowly for many years. He also stated that my brain and body has adjusted to housing this tumour and managed to drain fluid and function. During all this time my body has also become a wife, mother and teacher. I have a degree to my name and words like flexible, reliable and adaptable on my CV. I now have the scientific data to prove it!! :-)

So I now I walk around this planet knowing I have a tumour in my head, no drugs in my system, a fantastic diet and am feeling great!!!! I have moments when my mind drifts and I get a little scared, wanting to ring the surgeon and demand it is removed that afternoon! Then I remember the other people I sat with at the hospital and the wards I walked past. I quickly remind myself how bad it could be and how good life really is.


  1. You are such a bloody legend!!! cant say anymore really I think you have said enough to last a very long time. We all love you and miss you!!

  2. Juanita & I have just read the good news. Well done you. I said cross the bridge when you came to it... remember to mix with positive people!
    All well here ... no one suffered when the rock & roll began.

  3. In my experience of these matters (and I've had quite a bit) people either sink or swim. No one carries on as before. My own experience taught me that those who swim - like you - will find that this has been a life change for the better. I have never enjoyed life as much nor valued each day for what it has brought as I have since I first learned that I had cancer.

    It looks to me as an outsider that you have that natural optimism and strength to make this a positive experience.

    You are in my thoughts often.

  4. So glad the news is so positive!!!!! Awesome!

  5. Thanks to all of you. Saw my GP today and he hugged me!!!!! (Hardly know the guy).
    He said he loved meeting people who saw their health as something they can have control over, or at least a great deal of influence in (more of an holistic view I think). I am very grateful to his thorough and proactive approach to medical diagnosis and care.

    GB: You are so right. I already feel changed. Even in such a short time. I imagine I have a journey ahead of me with this tumour, but my new perspective is already affecting every daily and future decision we make at the moment.

  6. My god Jazz I cant beleive I missed your post!
    Blame it on Telecoms new "no more unlimited broadband" and painfully slow dial up and page loading. Im glad you have shared this as it does give a better understanding for us inquisitive and need to know scientific brains who cope better with full knowledge.

    You are very very strong hun, I am admiring your choices and descisions. Again do whats right for you, your living with this and will adjust accordingly because thats who you are :)

    One thing I have found is you are not your disease, its living along side it and taking each day as individual. You will hit pot holes at times but you will bounce back again. Do what you can to establish normalicy this will keep you sane, however when your body disagrees with this at times then go with the flow.
    Recently during my post op period I ranted at my body as it let me down, frustrated, scared and overwhelmed, yet the next day it gave releif in which I saw the light again. keep looking for the light and you will triumph xoxoxo

  7. Wowsers Jaz, hadn't caught up on your blog lately and you scared the daylights out of are one AMAZING lady, big ups to you and so glad to hear some good news, you have inspired me to eat healthy and think more proud of you for battling through with such positiveness, what must have been a worrying time for so amazed at your strength, great news....catch up soon xxxxx Sarah

  8. Jaz... its a little sad bout ya head, but u got lots of support and luv frm those in the south.... u r such a beautiful person and u will come thru this with the strenght & luv from us all....xo Julie


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